At the end of April, I underwent 10 hours (over a three day period) of neuropsychological testing and interviewing. Obviously, to go through the data of 10 hours of testing takes a while, so I had to wait until June 5th to get my results. Only a very small part of the results were actually a surprise, and none of it was bad news.
I was officially diagnosed on the autism spectrum! Yes, this is good news for me, and validates the “I think my brain works differently than the average population” feeling I’ve had my entire life. My official diagnosis is “autism spectrum disorder, level 1, without significant language or intellectual impairment” (because they like to make diagnosis names as long as possible). I’ll get more into the details of this diagnosis below.
I was also given a secondary diagnosis of “other specified depressive disorder,” which seems to essentially just be a moderate and persistent depression that doesn’t fit the diagnostic criteria for other depressive disorders; this wasn’t a surprise at all because I have had depression since I was in late elementary school (maybe about 10 years old), and have been treated off and on for years. Continue reading
On the 28th of December, I had a gastric emptying study done. Today, the 6th of January, I had my follow-up appointment with my gastroenterologist. It wasn’t quite what I expected…
First of all, let me explain what a gastric emptying study is. While the way they are conducted can vary quite a bit, the premise is the same: eat some food with a radioactive tracer in it, then get scanned periodically to see how fast the food empties from your stomach. For me, I had to eat some radioactive eggs (more like, one very small scrambled egg), then I could eat two pieces of toast with jelly, and I got a shot glass sized amount of water to wash it all down with. After I ate, they scanned me immediately to get a baseline (see what 100% looked like). For the next four hours, I was not allowed to eat or drink anything at all. Yes, four hours; I sat in a pretty, sunny hallway and read a book for four hours, minus the few minutes each scan took. The scanned me again at one hour, at two hours, and at four hours. After I left, they calculated the percentage of food left in my stomach at each scan, then sent the results to my doctor.
The scanning machine; I stood between the two giant paddles while they were scanning me.
Today, I noticed that my thorough blood testing results were posted to my patient portal. It did say that it was entered by my doctor (if I am understanding their notation properly), so I’m assuming he has actually looked at them. However, I suppose a nurse or medical assistant could also be adding them on to previously existing notes that have his name on them.
The results I’m about to talk about are just an observation from the report, and have not actually been interpreted by my doctor.
Today was my follow-up appointment with my gastroenterologist, and it was an extremely productive appointment! My GI doc is my favorite doctor, by quite a lot. They’re the most awkward subject matter, but they’re always productive and my doc refuses to give up on me. It’s a very refreshing change from how most doctors treat my cases.
Anyway, the follow-up was in regards to my HIDA scan. Continue reading
My stomach issues have been slowly getting worse and it’s been very disheartening. The delayed gastric emptying has hit ridiculous levels, and the pain and nausea can be incapacitating after I eat.
The absolute worst episode was the weekend my mother-in-law was in town… Of course, when people are in town, we try our best to not let my health mess with our plans. Becky, my MIL, was here from Friday night until midday Sunday. Continue reading
Since my experience with the colonoscopy stuff was so intense, and my anxiety too, I’m working on a small series for it. I should be posting it this week.
I’ll also post soon about my experience with the nasal probe that I just had to do on Monday and had removed today!
I’m an hour and a half into the prep fluid, so I don’t have long to type this out before I have to run to the restroom again. But I’m STARVING! I have been on a liquid diet for two days, thanks to the intensity of the prep I’m on, and all I want is REAL FOOD!!!! Gawd I’m hungry. Anything, really, just real bloody food.
The prep tastes horrid.
I’ll actually blog this later. Gotta go, lovies. Like those old commercials:
“Gotta go gotta go gotta go right now, gotta go gotta go gotta go!”
As I mentioned at the beginning of yesterday’s post (The Personal Hell That Is My IBS), my GI is starting to suspect that my IBS may not actually be IBS after all. Why has he come to this conclusion? Well, for the same reason I am not completely shocked by his conclusion, actually: because I just do not respond well to any treatment for IBS that I get put on. For some reason, everything we do to try to treat my digestion problems just seems to cause me an entirely new set of issues. My system just doesn’t behave at all like it’s supposed to, to anything at all. Wonderful.
The last several weeks, I’ve been absolutely miserable with allergy symptoms: crazy amounts of phlegm in my nose/sinuses, crazy amounts of post-nasal drip, even more intense nausea than normal (probably from swallowing all the phlegm), extremely itchy skin, itchy eyes, itchy ears, itchy nose, etc. It’s been extremely painful actually.
So why all the symptoms? I just assumed it’s because EVERYTHING is blooming. There is so much cotton blowing around (from cottonwood trees) that it looks like there was a giant pillow fight somewhere; the cars have been yellow for weeks thanks to the amount of pollen in the air.
I have decided to do genetic testing for Ehler-Danlos Syndrome, even though I know that EDS Type 3 (Hypermobility Type) doesn’t have a genetic marker. However, when I look at the list of typical symptoms for classic EDS, I have a lot of those too, so I want to be sure I don’t have that one. I do fit EDS Hypermobility Type far better, but I want to know for sure.
So I called my rheumatologist, who had mentioned giving me a referral to a geneticist if I wanted to pursue testing. He sent a referral over to the geneticist and when I got the phone call, I find out they are the ONLY adult geneticist in the entire state of Colorado! Because of that, the wait to get in is obscene. I am on the calendar and now I’m on the wait list, just in case an opening appears.